Unlisted: No Longer Engaging with the Illness

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That title, right?

Wouldn’t it be nice to no longer engage with our chronic illnesses? Just say to our bodies: “Okay, that’s enough. We’re healthy now.” It’s a rather bold and impossible statement, right? No longer engage with the illness, indeed.

But this is what I am proposing: we no longer engage with the illness on a mental and emotional level. We cannot walk away from the disease physically. It will always be with us until we die or there’s a cure. But we can choose to stop it from taking over our mental and emotional energy more than it needs.

There will be days where the illness affects our emotional and mental states, but it does not have to be every day.

The more energy we devote to the illness, the more control we give it in our lives. The disease might take away certain physical aspects, even hinder some of our mental faculties, but it does not rule over our lives so thoroughly. I am suggesting that we view the illness as a vestigial organ or nuisance limb that is always present but does not have to impact our daily lives.

No Longer Giving the Illness Control

Each time we dwell on our chronic illness, we are giving it complete control over our lives. You may not be able to escape the fact that you are bed-bound, but it does not have to maintain mental control over you. You may be stuck in bed, but you can work on adapting a project/task to accommodate the situation.

So many times, I thought about how I could not do something due to my fatigue, and there are still days where I struggle to adapt to the fatigue. But now, if it’s important to me, I find ways to work around the fatigue. I will work on the project early in the morning, make sure I do all that I can to boost my energy naturally, and finally, do what I can to push through it.

But let’s take a moment and reflect on what might be blocking you from taking back control: have you grieved your diagnosis yet?

This may be the number one thing preventing you from moving forward. Taking the time to grieve your diagnosis. You may think you’ve resolved it or that you’ve moved on, but if you find that the illness defines you and prevents you from being open to adaptations, you may yet need to finish grieving.

If you are early on in your illness or recently diagnosed, you are still trying to figure out what’s going on. That’s okay, it’s going to take some time. But make sure you mourn the life you had and the life you envisioned for yourself. You’ve lost both once you received your diagnosis and you need to work through that realization.

Once you’ve reached a space of healing and acceptance, you’ll find that it’s easier to put everything into its proper perspective and figure out how to adapt your new life around this roadblock.

Before accepting my illness, I assumed I would be secondary-progressive by the time I turned forty. Once I got into the space of acceptance and refused to let it control me, I now know that won’t be the case. I was open to asking my neurologist if I would progress, whereas before I didn’t want to see the answer. Fortunately for me, they told me I may never proceed to SPMS. But I was finally open to knowing the truth and not allowing the response to define where I was headed.

I will still have exacerbations, I can’t stop that. But when they do happen, I recognize them for what they are: telling me to slow down and put my welfare first. Find a way to adapt and overcome the current obstacle.

Gratitude for What you Have

It is imperative to be grateful for what you do have. While it’s hard to be grateful while stuck in bed or taking a steroid infusion, recognize what the illness hasn’t taken from you. Appreciate what the illness teaches.

Our illnesses take so much away from us that it’s hard to be grateful for each moment we have. Yet, our appreciation for life itself is an act of rebellion against the illness. It’s our opportunity to take a stand against it and declare that it no longer rules our lives. Focus on what we do have in our lives, rather than what we don’t.

Respect the Illness, but Move Forward

Time moves us forward. We cannot control time, we cannot control its progression. To be morbid: life is a slow march towards death. We cannot change that. What we do between birth and that final moment matters, and how we approach it matters. Often, we don’t think about death because if we focus too much time reflecting on it, it steals the precious moments we have alive.

Our illness is no different. For the most part, we cannot change certain aspects to it, yet how we move forward with it matters. If we focus too strictly on the illness, we allow the disease to steal the same precious moments aforementioned.

We should respect the illness, respect that we must take care of ourselves in light of our disease, but don’t grant it control over areas in our life that it has no reach.

For example, if you told me seven years ago, before my diagnosis, that I would be running nearly daily, I would have laughed at you. Before knowing I had MS, I didn’t think I was capable of being a runner even when I thought I was healthy. If you told me four years ago, three years post-diagnosis, I would have rolled my eyes.

I did not think it would be possible to continue my running, and I never imagined I could justifiably call myself an athlete, but I can today.

I am more of a runner now than before I knew I had MS. I am not saying that everyone can become more active with a chronic illness: what I am saying is that the chronic illness does not have to stop you from doing something you didn’t think possible. The only thing stopping me from considering myself a runner was the mental state I found myself in post-diagnosis. Once I denied the MS to control my perspective, I became more athletic than I was as a teenager.

Once I stopped putting what I realized were self-imposed limitations, my MS no longer controlled all areas of my life. I am finally able to see what I can and cannot do. And what I cannot do, I can find appropriate adaptations.

It’s challenging to get into this mental space, so it will take a lot of work. It will take reminding yourself, pushing yourself out of your comfort zone, and it will take you saying that you are worth no longer allowing your chronic illness to define you.

Take back control of your life.


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